one of the hardest and most isolating things about having a child with differences is that people want things to be well-packaged. people want things in bites. they want things with happy endings. because nobody wants to hear about a mess. nobody wants to untangle your mess. it makes other people uneasy. but really- a lot of life for us, is not well packaged, maybe not even packaged at all. it's often a lot of mess.
it's hard to write that- it's hard to write from a place that i know well, a place that will really always be. and it doesn't mean that life is bad or that next week won't be better, or that things are not "OK". it's just that things sometimes aren't. and that is what has to be OK.
it's the little things- the days when she is stuck like glue. when we're out to eat and she asks over and over, "where do sticky thoughts come from?" and has that far off look in her eyes- and i feel like i'm loosing her- to herself. and from where i sit i can see a table of girls her age laughing together- connected to each other- able to pick up the subtleties of language and expression and move the pace of the conversation appropriately and no one is left behind. and my face feels heavy and i can feel the sourness invading me, a hollowness- a sorrow. will she always be left behind?
when i picked her up from her afternoon program, she was upset and angry at some 6 year old who took her pile of grass- and she stomped her feet and shook her fists-while the first graders stare at her and back to me, and to her- as she tried to pull it together and tell me how mad she was- and i tried to find that place of protection for her, and for me, to separate us somehow- and i realized that i have no skills and i try to hold it together for her, for us, but inside i'm falling to bits, because this little display isn't some temper tantrum that will turn around quickly. this is a deep disconnect, a lack of awareness of how other people perceive her, a bad feeling, with out understanding of why people aren't getting her, and generated out of overwhelm.
how do you package these? how do you wrap them neatly?
today, i hold to this:
"yet this i call to mind and therefore i have hope, because of the Lord's unfailing love, we are not consumed."
and i do have hope.
and i love her intensely, and we are not consumed.
in pieces sometimes, but never consumed.
Tuesday, March 30, 2010
Saturday, March 27, 2010
close, but not quite
yesterday was friday. my "work" day. as if the other days aren't. it was crazy busy- i had a migraine-and my friend gave birth to a beautiful baby boy. and by the time i got home- i was a wreck. i was happy and sad- about being able to take care of sick people, and sad that they're at the end. about her new perfect little babe, and the absence of mine. about life being so full and sustaining and yet not what i thought it would be. so i made cookies and cried. i made dinner and cried. i went to chipotle to bring the third time new parents dinner - and cried. i held that little guy and i pulled it together- just one tear- maybe.
but there was one very funny part of the day- involving zoe. when i got to work and called mike he told me he thought that possibly zoe had had her first period. OK. i've been dreading this. not because i don't want my little girl to grow up - but because there should be an unwritten rule in the universe that you can not get your period until you: a) have properly learned to tend to important personal hygiene matters- such as bathing, and b) know that it's called a 'period' or whatever you want to call it in your house. at our house- we apparently don't have either of these mastered.
when i got home, i checked out the possible evidence and concluded it was unlikely, but to be sure, i asked zoe if anything different had happened today. if maybe she'd had some bleeding.....
"no" then she got really excited and said, "mommy! is it happening to me? am i getting my bladder?"
"no. no. thank God!! you are not getting your "bladder". and by the way- it's called a period."
"oh yeah, i forgot the name."
i laughed so hard, i cried again.
but there was one very funny part of the day- involving zoe. when i got to work and called mike he told me he thought that possibly zoe had had her first period. OK. i've been dreading this. not because i don't want my little girl to grow up - but because there should be an unwritten rule in the universe that you can not get your period until you: a) have properly learned to tend to important personal hygiene matters- such as bathing, and b) know that it's called a 'period' or whatever you want to call it in your house. at our house- we apparently don't have either of these mastered.
when i got home, i checked out the possible evidence and concluded it was unlikely, but to be sure, i asked zoe if anything different had happened today. if maybe she'd had some bleeding.....
"no" then she got really excited and said, "mommy! is it happening to me? am i getting my bladder?"
"no. no. thank God!! you are not getting your "bladder". and by the way- it's called a period."
"oh yeah, i forgot the name."
i laughed so hard, i cried again.
Thursday, March 25, 2010
this so isn't what i signed up for
we are at OT. occupational therapy-if you're lucky enough to not know the lingo. it's weekly. it's where a very patient therapist helps zoe's sensory system re-integrate, and works on the occupational needs of a kid- hand strength, motor planning, coordination. actually zoe is at OT doing the hard work and i'm at starbucks drinking a latte and feeling baffeled. some days, like today, i look at my life and can't believe that instead of ballet, we go to OT. instead of soccer, we do "social groups", that small situational changes, feel like great changes to zoe. and that some days, learning is impossible, like today. she is destracted by a shadow, the light, a very distant sound- the decorations on the shampoo bottle.
"mommy have you ever noticed those little stars on the bottle?"
"can you just wash your hands please and go finish writing your words?"
it had already been an hour- there were 10 words to be copied. i was flogging a dead horse.
i'm overwhelmed by her needs. by the literalness of her mind. her struggle to derive meaning from context. and how desparately important this ability is to understanding and relating to people.
"what does 'thoughtful' mean?"
"thinking of and putting others first"
"what does that mean?"
her mind i'm sure conjured up physically moving people in front of her. i can't even describe things in a way that make sense.
i've only been home for three days. i'm such a grump. so quickly deflating. when i was gone, she went to her monday visit to her old school. it was harder than it's been. again, small changes are big for her. she was nervous- they said- distracted and distracing- disconnected.
so maybe it's time to buy birkenstocks and get some chickens - maybe it's time to settle in and become a real "home-schooler" (mild gag). it's just not something i set out to do. this was not the plan. i'm a doctor. i don't have a lot of patience. i don't know anything about teaching kids with learning disabilities. this was OK for a year, but two? or three? or more?
but life is what happens when your busy making plans. how much control do we actually have over life? 60% maybe? yet we spend about 90% trying to control that 60%? maybe my plans for trying to get her back to school are my heading off away from Nineveh again and God is tipping the ship- or maybe i'm in the belly of the whale.
the starbucks 'bold pick of the week' is the East Africa Blend. i can close my eyes and see the tea fields covering mountainsides and smell the burning leaf piles in the streets and that spicey salty teaky smell of the shops and feel that warmth and the bumpiness of the road that is rarely paved. being there has been on my heart since i was 17. maybe it's time. perhaps this IS the plan for me - a sandal wearing, chicken feeding, home-schooling african mamma.
or maybe it doesn't matter where we are- and maybe not even what we're doing but how we're doing it. today, i'm not doing it very well. today i'm elsewhere. today i need to remember to love the beauty of her ability to see the light and shadow in a way that i never will. i need to notice the little stars on the shampoo bottle. writing helps me get there. re-inflate.
'Because I know that time is always time
And place is always and only place
And what is actual is actual only for one time
And only for one place
I rejoice that things are as they are'
TS Eliot
"mommy have you ever noticed those little stars on the bottle?"
"can you just wash your hands please and go finish writing your words?"
it had already been an hour- there were 10 words to be copied. i was flogging a dead horse.
i'm overwhelmed by her needs. by the literalness of her mind. her struggle to derive meaning from context. and how desparately important this ability is to understanding and relating to people.
"what does 'thoughtful' mean?"
"thinking of and putting others first"
"what does that mean?"
her mind i'm sure conjured up physically moving people in front of her. i can't even describe things in a way that make sense.
i've only been home for three days. i'm such a grump. so quickly deflating. when i was gone, she went to her monday visit to her old school. it was harder than it's been. again, small changes are big for her. she was nervous- they said- distracted and distracing- disconnected.
so maybe it's time to buy birkenstocks and get some chickens - maybe it's time to settle in and become a real "home-schooler" (mild gag). it's just not something i set out to do. this was not the plan. i'm a doctor. i don't have a lot of patience. i don't know anything about teaching kids with learning disabilities. this was OK for a year, but two? or three? or more?
but life is what happens when your busy making plans. how much control do we actually have over life? 60% maybe? yet we spend about 90% trying to control that 60%? maybe my plans for trying to get her back to school are my heading off away from Nineveh again and God is tipping the ship- or maybe i'm in the belly of the whale.
the starbucks 'bold pick of the week' is the East Africa Blend. i can close my eyes and see the tea fields covering mountainsides and smell the burning leaf piles in the streets and that spicey salty teaky smell of the shops and feel that warmth and the bumpiness of the road that is rarely paved. being there has been on my heart since i was 17. maybe it's time. perhaps this IS the plan for me - a sandal wearing, chicken feeding, home-schooling african mamma.
or maybe it doesn't matter where we are- and maybe not even what we're doing but how we're doing it. today, i'm not doing it very well. today i'm elsewhere. today i need to remember to love the beauty of her ability to see the light and shadow in a way that i never will. i need to notice the little stars on the shampoo bottle. writing helps me get there. re-inflate.
'Because I know that time is always time
And place is always and only place
And what is actual is actual only for one time
And only for one place
I rejoice that things are as they are'
TS Eliot
Wednesday, March 24, 2010
begonias and the little agonies
when i first started "being home" i had all sorts of expectations for myself. to suddenly jump into the ultimate mommy role. part of this was genuinely soul felt and desired, and part was a type A personality thing. i remember last june in the evening, after a really long and hard day with zoe, i had decided to lug the three kids to the market to buy food for dinner and the appropriate makings for “rainbow cake” which i’d convinced myself i needed to do as a project to be a good stay at home happy mom (inspired by meg duerksen :). and i needed some white wine- for sanity. the boys were in the cart – the special spaceship cart with steering wheels- and i had a list- and zoe had her mind calling to her over and over. she was just in that sticky place of no return. overwhelmed by the amount of stuff, the background noises, she couldn't stop asking for everything, and i mean everything in site, and in a very panicked voice. at first i got annoyed. then i ran into a neighbor and remembered my manors and calmed down. i managed to get through fruits and vegetables and the bakery with only an extra avocado and some peaches. (she doesn't even like avocados!) in the flower section- zoe presented me with an 18$ small bamboo plant with a dangling mini-disco ball and a dead teacup arrangement for 8$. i had myself together, ooed and ahhed over them and explained while she had great taste :), we didn’t need any plants. next came the large lily plant- again, complements but please put it back-
"daddy hates lilies"
" why?"
"they smell like funerals."
then came the sunflowers- i could feel my blood pressure rise- really- i now believe you can feel that depite my medical trainings belief otherwise. finally, i saw some begonias for $3.99.
“ zoë ", i said, “ you may pick out one of those begonias in any color and we can get that”.
on one hand feeling relief that we’d satisfied some unquenchable idea, but also let down that i’d given in and
we still hadn’t gotten to the part of the supermarket with aisles! with begonia in tow, she wanted CapriSun juice boxes, (we have apple ones from Trader Joes at home). then some random Mexican sauce- (she doesn’t like Mexican food). each time i said no was met by a dramatic exclamation of how unfair it all was and how i was mean and then followed by many whinny "but why???'s"
then we approached the dreaded cereal aisle- which i’m convinced is put there to test all parents with children under 18.
"no you can’t get cookie crips, or frosted flakes, or lucky charms or sugar smacks or anything else that is not on the list!!!!!!"
i had had it. seriously, i wanted to rip that begonia out of her sweaty little hands and wring her neck! she knew i was mad. she held the begonia up and literally hid behind it in the wine aisle – i’m sure a sure sign of likely parental misconduct- especially in the alcohol section.
finally we arrived at the fish counter. i was trying to buy tilapia when she noticed the lobsters in the tank.
“excuse me sir? are these lobsters happy or mad?” oh here it comes...
“well, probably mad, because they’d rather be in the ocean.”
“ well then I think you are a mean man- a mean, mean man! keeping these lobsters in this tank!” she shouted. people were now staring.
anger was now replaced by that shame. that embarrassment.
it was 95 degrees outside- 110 inside me. we drove home and i put on Noggin- crack for kids- had a glass of wine and made dinner. i allowed myself to feel deeply sorry for myself – when no one was looking except the dog. her obsessiveness was worsening. her sticky thoughts were overtaking her. it seemed that everywhere we went - she couldn't handle it. and i couldn't handle her.
it was 95 degrees outside- 110 inside me. we drove home and i put on Noggin- crack for kids- had a glass of wine and made dinner. i allowed myself to feel deeply sorry for myself – when no one was looking except the dog. her obsessiveness was worsening. her sticky thoughts were overtaking her. it seemed that everywhere we went - she couldn't handle it. and i couldn't handle her.
after dinner and clean up and bath time and bed time and much help from Mike, i sat outside on the phone with one of my best girlfriends and the warm evening hugged me. she reminded me of who i am, of who zoe is, with her differently wired brain, she acknowledged the struggle, and she forgave me. i was at peace- even in this day, even with this girl, even with myself- who i can never escape from.
zoe came outside after her shower, she said she was sorry, she said perhaps if i sing to her in the market to remind her to not ask for things it would help. i forgave her. i asked her to forgive me for forgetting, and yelling, and not understanding her. it’s OK mommy, and she sang her favorite Billy Bragg song, “at the top of the stairs the lights on..”
this is Life. beautiful begonias beside the little agonies.
this is Life. beautiful begonias beside the little agonies.
Tuesday, March 23, 2010
little moments
i just got back from a fabulous weekend away. away at my old home. away in northern california. away with old and new friends. there was great food and wine, time to read, time to be quiet, to hike and for connection and laughter. lots of little moments. i am refreshed. i am reminded of how good it all really is. i am thankful!
on the plane, i watched The Blind Side. it's about a boy from the projects who ends up at a private christian school, and is taken in by a wealthy family, where he thrives and ends up a famous football player. its about good coming out of bad. it's about potential being reached, and about transformation for many. it reminded me of Temple Grandin, a movie about an autistic woman who succeeds in graduating from college and grad school and is now teaching at a university. she was able to use her "skills" and strengths from autism to help her understand animal behavior. when you break down any story or life, it is the little things that happen that are life changing. it's the mechanic who lets Big Mike sleep at his house and then asks the private school to take him- it's the little boy who smiles at him on the playground when no one else will talk to him. these were the seeds that got him where he was- not just the woman who ultimately took him in. temple grandin's science teacher- and college roommate, not just her mother. and this gives me so much hope.
there are so many moments in our lives, in our days when we have a chance to make the right decision, to advocate for a voiceless someone, to pause and be present. and these little moments add up to our lives- these little pieces can collectively change worlds.
like the man on the plane next to me, who prayed for zoe before take off - although all he knew was that she struggled with vague learning issues and that i homeschooled her- he took hands with me and with the poor guy between us - a 20-something guy from the bay area- and lifted her up to God- and asked for healing and specifically for her focus and her fine motor skills. i'd never said a word about focus and fine motor skills, but those are her biggest challenges. it's those little moments. they do matter.
when zoe was about three years old- and lacked appropriate stranger anxiety- we took her to a cafe to hear some music. there was an older woman- who, if anything, should have looked scary to a child. not well put together- very eccentric, and kind of odd. she was not the kind of person that you'd not want to pick up your child. but zoe, who seems to see the beauty in people when others don't, went up to her and spoke with her, sat on the couch with her- fully engaged her. i remember feeling a little uncomfortable, and yet so thankful for her ability to see through all that. the woman was so touched- so thankful- she had tears in her eyes-this little girl had brought back her humanity. this is where zoe is most special- she gets those little moments- who knows if it was life changing for this woman, but it was for me.
on the plane, i watched The Blind Side. it's about a boy from the projects who ends up at a private christian school, and is taken in by a wealthy family, where he thrives and ends up a famous football player. its about good coming out of bad. it's about potential being reached, and about transformation for many. it reminded me of Temple Grandin, a movie about an autistic woman who succeeds in graduating from college and grad school and is now teaching at a university. she was able to use her "skills" and strengths from autism to help her understand animal behavior. when you break down any story or life, it is the little things that happen that are life changing. it's the mechanic who lets Big Mike sleep at his house and then asks the private school to take him- it's the little boy who smiles at him on the playground when no one else will talk to him. these were the seeds that got him where he was- not just the woman who ultimately took him in. temple grandin's science teacher- and college roommate, not just her mother. and this gives me so much hope.
there are so many moments in our lives, in our days when we have a chance to make the right decision, to advocate for a voiceless someone, to pause and be present. and these little moments add up to our lives- these little pieces can collectively change worlds.
like the man on the plane next to me, who prayed for zoe before take off - although all he knew was that she struggled with vague learning issues and that i homeschooled her- he took hands with me and with the poor guy between us - a 20-something guy from the bay area- and lifted her up to God- and asked for healing and specifically for her focus and her fine motor skills. i'd never said a word about focus and fine motor skills, but those are her biggest challenges. it's those little moments. they do matter.
when zoe was about three years old- and lacked appropriate stranger anxiety- we took her to a cafe to hear some music. there was an older woman- who, if anything, should have looked scary to a child. not well put together- very eccentric, and kind of odd. she was not the kind of person that you'd not want to pick up your child. but zoe, who seems to see the beauty in people when others don't, went up to her and spoke with her, sat on the couch with her- fully engaged her. i remember feeling a little uncomfortable, and yet so thankful for her ability to see through all that. the woman was so touched- so thankful- she had tears in her eyes-this little girl had brought back her humanity. this is where zoe is most special- she gets those little moments- who knows if it was life changing for this woman, but it was for me.
Wednesday, March 17, 2010
happy saint patricks day
i'm not going to start this one off with the anything about the weather. just that i'm exhausted. getting ready to go to california for one of my oldest friends fortieth birthday extravaganza- 5 days kid free! i can't wait. but getting ready, leaving all the instructions- all that i'm barely on top of when i am here, getting stuff with work squared away, and getting ready for the trip - i'm exhausted.
it's saint patricks day- and yes i wore green-i even baked green saint patricks day cupcakes, but i'm embarrassed to say i didn't know what or why we celebrate it- so i asked the kids.
zoe said, "oh, oh i know, because of some little guy who lives under a rainbow and has a pot of gold!"
jude said, "zoe it's called a leprechaun!"
bryn said, "you have to wea-or gween or you get piieenched!"
mike said it's about saint patrick driving the snakes out of ireland. it rang a distant bell. i'm sure he's right- he always knows.
anyway- my dad sent me this link- an irish blessing- it's beautiful words, and pictures and music- and i think it's better than green beer and leprechauns. check it out.
http://www.e-water.net/viewflash.php?flash=irishblessing_en
it's saint patricks day- and yes i wore green-i even baked green saint patricks day cupcakes, but i'm embarrassed to say i didn't know what or why we celebrate it- so i asked the kids.
zoe said, "oh, oh i know, because of some little guy who lives under a rainbow and has a pot of gold!"
jude said, "zoe it's called a leprechaun!"
bryn said, "you have to wea-or gween or you get piieenched!"
mike said it's about saint patrick driving the snakes out of ireland. it rang a distant bell. i'm sure he's right- he always knows.
anyway- my dad sent me this link- an irish blessing- it's beautiful words, and pictures and music- and i think it's better than green beer and leprechauns. check it out.
http://www.e-water.net/
Monday, March 15, 2010
lessons
i'm thankful for sunshine. for sisters. for being reminded that it's ok to have a bad day or even a bad week. that these moments don't define us although they will if we let them. but i do get tired of myself having to learn the same lessons over and over again.
every so often, when things get crazy around my house, or i should say, more crazy, i go into lock down mode. maybe this stemmed from realizing that my "character quality of the week" - obedience vs. stubbornness - has been on the fridge for 7 months! not because i really like it and i've continued to put up the other character qualities, but because it's so hard for my kids, that we haven't been able to move on. or maybe it's because i have an uncountable number of goodie bag "toys" all over my house- and other small broken pieces of toys that have escaped from the bin under the bed called "purgatory" (where toys wait for a while and if not asked for- go bye bye) that seem to serve only as points of asserting ones power rather than actually being played with. "that's mine!" if someone else has it. alternating with "that's not mine!" if it needs to be cleaned up. or perhaps it 's because while i've given up wine for lent- OK so i've had a few feast days- the whining in the house has gotten out of control.
so this week i've battened down the hatches, i've tightened up on the reins, because i need to remind three little people who is the boss. so we had a "family meeting". there needs to be clean up and their needs to be no whining- and if not, there will be consequences. and all this falls under the banner of obedience. they looked me in the eyes, they rolled their eyes and they started the "buts..." which was great- because it gave me an opportunity to explain in real time, what i was talking about. and the funniest thing is they, especially jude, love the rules. they act like they don't - but they CRAVE boundaries, they don't want to be in charge although they act like they do. they want to know that mike and i are in control, that the rules are clear, that there are reliable consequences, and that they are safe. this makes them feel safe. feeling bad that they're missing dessert when they've lost it for hitting someone, and then giving it back may make their mouth happy, but actually it's like removing their safety net. kids want to know what is expected and they want that to be enforced when they violate it. at least my kids. and if i don't follow through- they push harder, and the craziness escalates.
a few months ago, i had little sticker charts for each kid, with the different things that each child was working on and then we together evaluated how they did at the end of the day. it worked really well- (until the poster board was filled and i didn't make new ones). they were working on their behavior, but they were also learning how to self-evaluate, and self-reflect.
i made my self a chart- it hangs over my kitchen sink-
i don't get any stickers on mine, but like the character quality of the week- i still have a long way to go.
every so often, when things get crazy around my house, or i should say, more crazy, i go into lock down mode. maybe this stemmed from realizing that my "character quality of the week" - obedience vs. stubbornness - has been on the fridge for 7 months! not because i really like it and i've continued to put up the other character qualities, but because it's so hard for my kids, that we haven't been able to move on. or maybe it's because i have an uncountable number of goodie bag "toys" all over my house- and other small broken pieces of toys that have escaped from the bin under the bed called "purgatory" (where toys wait for a while and if not asked for- go bye bye) that seem to serve only as points of asserting ones power rather than actually being played with. "that's mine!" if someone else has it. alternating with "that's not mine!" if it needs to be cleaned up. or perhaps it 's because while i've given up wine for lent- OK so i've had a few feast days- the whining in the house has gotten out of control.
so this week i've battened down the hatches, i've tightened up on the reins, because i need to remind three little people who is the boss. so we had a "family meeting". there needs to be clean up and their needs to be no whining- and if not, there will be consequences. and all this falls under the banner of obedience. they looked me in the eyes, they rolled their eyes and they started the "buts..." which was great- because it gave me an opportunity to explain in real time, what i was talking about. and the funniest thing is they, especially jude, love the rules. they act like they don't - but they CRAVE boundaries, they don't want to be in charge although they act like they do. they want to know that mike and i are in control, that the rules are clear, that there are reliable consequences, and that they are safe. this makes them feel safe. feeling bad that they're missing dessert when they've lost it for hitting someone, and then giving it back may make their mouth happy, but actually it's like removing their safety net. kids want to know what is expected and they want that to be enforced when they violate it. at least my kids. and if i don't follow through- they push harder, and the craziness escalates.
a few months ago, i had little sticker charts for each kid, with the different things that each child was working on and then we together evaluated how they did at the end of the day. it worked really well- (until the poster board was filled and i didn't make new ones). they were working on their behavior, but they were also learning how to self-evaluate, and self-reflect.
i made my self a chart- it hangs over my kitchen sink-
i don't get any stickers on mine, but like the character quality of the week- i still have a long way to go.
Saturday, March 13, 2010
double rainbow
it's been the weirdest weather- and i can totally relate. it has been a week of rain, then moments of sun, then cold, more rain, hail even. then warm rain, then some sun. the kind of weather where you make plans and then in a few seconds have to re-think them. today was the strangest of all- like the whole week of it put into one day. and it culminated in the most amazing full-on double rainbow. two giant arcs one on top of the other. we were driving almost under them with the dark grey/blue sky behind them, raining and sunny behind us. the light was so intense- shining off the trees and the mistletoe in the trees, incredibly beautiful.
all week i'd felt like the weather this day. tumultuous and changing, feeling peaceful then irritated, and surprised at myself for feeling and being this way. there was the lice, and mike being away and that i'm waiting for my oldest friend to have her baby, which always makes me edgy- and the weird weather.
but it doesn't matter, because there was this spectacular, magnificent rainbow. it was so old and promising- so natural and so rare and so needed. people were pouring out of restaurants and bars and pointing and taking pictures. i just kept staring and taking mental pictures so i wouldn't forget- and saying how beautiful it was and telling the kids about Gods promise to noah to never destroy the earth again with a flood. and as i was talking and jude was saying ,"mommy you already told us how amazing it is!" it was like we were driving through the open arms of God- and He was whispering- i keep my promises, all of them. you will never be destroyed. this simple reminder, that doesn't come along all that often, not in this way, not stretched across the entire sky for minutes, not double- was exactly what i needed to see- what i needed to hear- what i needed, to remember.
all week i'd felt like the weather this day. tumultuous and changing, feeling peaceful then irritated, and surprised at myself for feeling and being this way. there was the lice, and mike being away and that i'm waiting for my oldest friend to have her baby, which always makes me edgy- and the weird weather.
but it doesn't matter, because there was this spectacular, magnificent rainbow. it was so old and promising- so natural and so rare and so needed. people were pouring out of restaurants and bars and pointing and taking pictures. i just kept staring and taking mental pictures so i wouldn't forget- and saying how beautiful it was and telling the kids about Gods promise to noah to never destroy the earth again with a flood. and as i was talking and jude was saying ,"mommy you already told us how amazing it is!" it was like we were driving through the open arms of God- and He was whispering- i keep my promises, all of them. you will never be destroyed. this simple reminder, that doesn't come along all that often, not in this way, not stretched across the entire sky for minutes, not double- was exactly what i needed to see- what i needed to hear- what i needed, to remember.
Thursday, March 11, 2010
it was all the staplers fault
lets just say- i knew we'd be in for it today. mike is in miami. it's raining- it's been raining and it's going to keep raining. and my barometer for how zoe will do today, showed - trouble likely.
these days when i walk the boys around the corner to preschool- she does her writing assignment. this entails copying a list of either spelling words or vocab words with their definitions- today it's the later. P.S. -it's thursday- and we've been copying the same words all week. how she does with this task is a pretty good measure of what kind of day we're in for. as i unlock the door, i whisper a small prayer- please let her be done with her words, and please let her have done a good job, and feel good about it- inside, she's playing and proudly announces she's done - phew! excellent!
"let's go look at your words!"
oh dear God-
she has basically scribbled shaky parkinson's like words all over the page- she's standing next to me smiling- "oops! i guess i was a little cold".
"do you think there is a better way you could have handled being cold?"
"i guess i could have gotten a coat on."
"yup. OK- lets do it again."
then began the half hour of dillydallying - she decides to sharpen her pencil- then every pencil in the box. she wants to apologize again for not doing good work. she wants to ask me some random question about some object on the desk. finally after i threaten to throttle her and tell her she can not get up until she's done, that she may not speak until she's done- she spends 10 minutes max and does very well.
i know it's not eating worms- but this makes me crazy. because she can clearly do the task- yet instead of 10 minutes- it was literally an hour of "work".
but, here is the good news- here is the grace-
6 months ago- this would have disintegrated into a total melt down mess. 6 months ago, she would NEVER have been able to sit down and and regroup and actually do the words- she would have cried and said she was stupid and thrown her pencil down. she would have been unable to pull it back together and move on to the next subject.
this is huge progress!!
how quickly we forget. and each time the words take an hour- its a learning opportunity- for both of us. the irony is we're both working on the same things- she practices getting it together- i practice getting it together. and when i can stop and see the progress- when i can get through my own over annoyance at the task not being completely in a timely fashion :) and when i can see that what's so much more important than writing a list of words, is being proud of yourself, of getting it together, or learning to try again when you fail then i'm so proud of her- because this is where it's at- where it needs to be.
and here's why we quickly forget. i knew it would happen! i knew it.
it just took a few hours.
i pull up in the car to pick zoe up from OT and see her in the hall, doing her "boneless" dance ie: this is my body's way of saying i'm extremely frustrated and i give up.
my response- oh crap- deep breath.
the therapist asks if they can have 5 minutes.
sure- i mean great- if you can work through this with her in 5 minutes-and i get a happy kid- fantastic, and good luck with that.
10 minutes. and out she storms, red-faced, pursed lips and stomping feet. as i suspected. i wonder what happened- kind of- but i kind of don't care- i really don't want to deal- deep breath.
" I WANTED TO FINISH MY PROJECT BUT THE STAPLER BROKE!!"
oh- now i get it, totally great reason to get upset and throw a fit and waste 3 peoples time and make your brothers wait for us as we're late for pick up. that damn stapler! in my calm -annoyed- but calm voice i ask her to get in the car so we can get the boys. and instantly - seriously- as if a blanket of warm goodness has descended on her- she says, "i'm sorry mommy- i just got really upset."
again- there is the grace- there is the progress. only i can't see it because
while i'm calmly talking to her in the way way back, through the rear view mirror, i'm having not-so-calm-images of this being the rest of my life. of her never being able to handle being back at school because if you write like you have parkinsons and you go to bits over a stapler- no one will want you there. and i'm envisioning her trying to have a job, but melting down because the office copier is stuck. and while i'm talking about choices- i'm thinking that zoe really should have been born to the landed gentry in victorian england where manners defined you (she is undyingly polite) and ladies had other people wash their hair, and dress them- so all her OT needs would be bypassed. she could sip tea and wear a shawl and go for strolls in the garden. when they didn't have staplers and copiers.
"mommy i think my head was just too full and it had to come out."
"what do you mean zoe?, help me understand what that means."
"i just don't know. "
"but if we could figure it out- we could fix it."
"maybe it's just part of 'my disorder'- maybe it's just me."
maybe she's right again. maybe it's about accommodation and adjustment, not cure, or fix. it's about the long distance run- not the sprint. rats. deep breath.
as we drove on, we talked about flexibility. we talked about our actions having consequences on other people. we talked about not having control over much of what happens in life- like broken staplers-(or having kids with learning disorders) and we talked about having control over ourselves and our responses to life. we talked about choices.
"mommy next time i'll make a better choice, next time i'll be flexible."
but will i? will i be able to have faith in her- going on and out into the world to accomplish what ever God made her to do- big or small? what if temple grandins mom had not pushed her - different not less. what if annie had given up on helen keller? my mom used to say that raising kids was like putting pennies in the bank- sometimes it feels like with zoe-i'm putting $10 bills into a magic bank that changes each bill into a penny- so much effort and it takes so much more time.
but if i peel off the layer of the stapler scene fear, and really look into my heart- i do see her doing great things- small possibly, but none the less great things, because she already does. and because look at her progress!
"Little darling, it's been a long cold lonely winter
Little darling, it feels like years since it's been here
Here comes the sun, here comes the sun
and I say it's all right"
no really- here comes the sun!!
these days when i walk the boys around the corner to preschool- she does her writing assignment. this entails copying a list of either spelling words or vocab words with their definitions- today it's the later. P.S. -it's thursday- and we've been copying the same words all week. how she does with this task is a pretty good measure of what kind of day we're in for. as i unlock the door, i whisper a small prayer- please let her be done with her words, and please let her have done a good job, and feel good about it- inside, she's playing and proudly announces she's done - phew! excellent!
"let's go look at your words!"
oh dear God-
she has basically scribbled shaky parkinson's like words all over the page- she's standing next to me smiling- "oops! i guess i was a little cold".
"do you think there is a better way you could have handled being cold?"
"i guess i could have gotten a coat on."
"yup. OK- lets do it again."
then began the half hour of dillydallying - she decides to sharpen her pencil- then every pencil in the box. she wants to apologize again for not doing good work. she wants to ask me some random question about some object on the desk. finally after i threaten to throttle her and tell her she can not get up until she's done, that she may not speak until she's done- she spends 10 minutes max and does very well.
i know it's not eating worms- but this makes me crazy. because she can clearly do the task- yet instead of 10 minutes- it was literally an hour of "work".
but, here is the good news- here is the grace-
6 months ago- this would have disintegrated into a total melt down mess. 6 months ago, she would NEVER have been able to sit down and and regroup and actually do the words- she would have cried and said she was stupid and thrown her pencil down. she would have been unable to pull it back together and move on to the next subject.
this is huge progress!!
how quickly we forget. and each time the words take an hour- its a learning opportunity- for both of us. the irony is we're both working on the same things- she practices getting it together- i practice getting it together. and when i can stop and see the progress- when i can get through my own over annoyance at the task not being completely in a timely fashion :) and when i can see that what's so much more important than writing a list of words, is being proud of yourself, of getting it together, or learning to try again when you fail then i'm so proud of her- because this is where it's at- where it needs to be.
and here's why we quickly forget. i knew it would happen! i knew it.
it just took a few hours.
i pull up in the car to pick zoe up from OT and see her in the hall, doing her "boneless" dance ie: this is my body's way of saying i'm extremely frustrated and i give up.
my response- oh crap- deep breath.
the therapist asks if they can have 5 minutes.
sure- i mean great- if you can work through this with her in 5 minutes-and i get a happy kid- fantastic, and good luck with that.
10 minutes. and out she storms, red-faced, pursed lips and stomping feet. as i suspected. i wonder what happened- kind of- but i kind of don't care- i really don't want to deal- deep breath.
" I WANTED TO FINISH MY PROJECT BUT THE STAPLER BROKE!!"
oh- now i get it, totally great reason to get upset and throw a fit and waste 3 peoples time and make your brothers wait for us as we're late for pick up. that damn stapler! in my calm -annoyed- but calm voice i ask her to get in the car so we can get the boys. and instantly - seriously- as if a blanket of warm goodness has descended on her- she says, "i'm sorry mommy- i just got really upset."
again- there is the grace- there is the progress. only i can't see it because
while i'm calmly talking to her in the way way back, through the rear view mirror, i'm having not-so-calm-images of this being the rest of my life. of her never being able to handle being back at school because if you write like you have parkinsons and you go to bits over a stapler- no one will want you there. and i'm envisioning her trying to have a job, but melting down because the office copier is stuck. and while i'm talking about choices- i'm thinking that zoe really should have been born to the landed gentry in victorian england where manners defined you (she is undyingly polite) and ladies had other people wash their hair, and dress them- so all her OT needs would be bypassed. she could sip tea and wear a shawl and go for strolls in the garden. when they didn't have staplers and copiers.
"mommy i think my head was just too full and it had to come out."
"what do you mean zoe?, help me understand what that means."
"i just don't know. "
"but if we could figure it out- we could fix it."
"maybe it's just part of 'my disorder'- maybe it's just me."
maybe she's right again. maybe it's about accommodation and adjustment, not cure, or fix. it's about the long distance run- not the sprint. rats. deep breath.
as we drove on, we talked about flexibility. we talked about our actions having consequences on other people. we talked about not having control over much of what happens in life- like broken staplers-(or having kids with learning disorders) and we talked about having control over ourselves and our responses to life. we talked about choices.
"mommy next time i'll make a better choice, next time i'll be flexible."
but will i? will i be able to have faith in her- going on and out into the world to accomplish what ever God made her to do- big or small? what if temple grandins mom had not pushed her - different not less. what if annie had given up on helen keller? my mom used to say that raising kids was like putting pennies in the bank- sometimes it feels like with zoe-i'm putting $10 bills into a magic bank that changes each bill into a penny- so much effort and it takes so much more time.
but if i peel off the layer of the stapler scene fear, and really look into my heart- i do see her doing great things- small possibly, but none the less great things, because she already does. and because look at her progress!
"Little darling, it's been a long cold lonely winter
Little darling, it feels like years since it's been here
Here comes the sun, here comes the sun
and I say it's all right"
no really- here comes the sun!!
Tuesday, March 9, 2010
best laid plans
what is the expression, the best laid plans of mice and men often go awry. or perhaps in my case, the best laid plans of lice and men.
poor jude- it was supposed to be his birthday dinner, with the extended family, opening his "big" present. i'd even made him a star wars cake. he'd had a fun day at his friends house. i'd strategically off-loaded zoe at her favorite aftercare program "soulshine" so i could finally vacuum the house, and bryn was down for a nap- when we left to pick them up- the root vegetables were in the oven- and the cake was done, the house- clean. things were going great! i had an hour until the family was coming.
i left the boys in the car and went to find zoe at the soulshine compound- knowing it would be hard to pull her away from the baby chicks they'd just acquired. one of the helpers pulled me aside and in a hushed voice told me she thought she'd seen a louse in zoe's hair. great. i'm sure not- i'm sure she was just -itchy. i itched and scratched the whole way home, then in the drive way with dolly parton blaring from the car- (he's alive!) i looked into that mass of blond hair and sure enough- lice. yyyyyuuuuuuccccckkkkkkkk!!! (and that other word that rhymes).
suddenly- as always happens, all my doctor knowledge is out the window- and i'm on the phone, calling my friends who've dealt with the lice thing before- because until tonight, i was a lice virgin.
i tried to contain myself- but there are only a few things that really gross me out- i'm ok with blood, vomit, poop and peoples insides. foul wounds are fine- but sputum and infesting bugs, not so good. and i absolutely can't deal with the combination of bathroom items in my kitchen- which somehow became unavoidable. "boil the brushes" my friend told me- "in the kitchen?? you want me to stick a hair brush on my stove?"
while we were still in the drive way- zoe began to freak out a little- i have to say i was too, because there were bugs crawling through her hair, because i knew this meant umpteen loads of laundry, and picking through the hair of someone who can barely handle a gentle hairbrush. and because i knew my family would respectfully decline coming over for judes birthday dinner. my whole day of planning out the window! i needed to focus on poor zoe with the lice- who kept alternating between, "this is the worst day of my life!" and "i'm so sorry that this happened" as if it's her fault. i became a screaming grump and others came to the rescue. my mom dropped off judes present and a lice kit (just meet me out in the driveway- she said). my friend with the most recent lice experience dropped off her extra lice kit- so we'd be covered. i made dinner, stripped all the beds, bagged the stuffed animals, started the laundry and , yuck, boiled the brushes. mike dealt with the hair-washing, and the nit picking (luckily, no nits!).
what's so funny about this evening is how typical it is - the foiling of the plans- i had specifically wanted this day to be all about jude- because so much of life is all about zoe. it was the first day in a long while, where i had been able to arrange a day with no zoe therapies to drive to or wait for, no rushing out of the house to get her somewhere. i wanted him, at least on his birthday, to have it be about him. so he had a play date, he got to choose the meals and the music in the car (yes dolly parton), and he didn't have to always come second- and then of course, - zoe comes home with lice- once again, not that she would have ever asked for it, she accidentally steals the spot light! he had to wait to open his gifts, wait to eat his dinner and then get his hair deloused too, just in case. jude- happy birthday- you'll be a better man for it.
poor jude- it was supposed to be his birthday dinner, with the extended family, opening his "big" present. i'd even made him a star wars cake. he'd had a fun day at his friends house. i'd strategically off-loaded zoe at her favorite aftercare program "soulshine" so i could finally vacuum the house, and bryn was down for a nap- when we left to pick them up- the root vegetables were in the oven- and the cake was done, the house- clean. things were going great! i had an hour until the family was coming.
i left the boys in the car and went to find zoe at the soulshine compound- knowing it would be hard to pull her away from the baby chicks they'd just acquired. one of the helpers pulled me aside and in a hushed voice told me she thought she'd seen a louse in zoe's hair. great. i'm sure not- i'm sure she was just -itchy. i itched and scratched the whole way home, then in the drive way with dolly parton blaring from the car- (he's alive!) i looked into that mass of blond hair and sure enough- lice. yyyyyuuuuuuccccckkkkkkkk!!! (and that other word that rhymes).
suddenly- as always happens, all my doctor knowledge is out the window- and i'm on the phone, calling my friends who've dealt with the lice thing before- because until tonight, i was a lice virgin.
i tried to contain myself- but there are only a few things that really gross me out- i'm ok with blood, vomit, poop and peoples insides. foul wounds are fine- but sputum and infesting bugs, not so good. and i absolutely can't deal with the combination of bathroom items in my kitchen- which somehow became unavoidable. "boil the brushes" my friend told me- "in the kitchen?? you want me to stick a hair brush on my stove?"
while we were still in the drive way- zoe began to freak out a little- i have to say i was too, because there were bugs crawling through her hair, because i knew this meant umpteen loads of laundry, and picking through the hair of someone who can barely handle a gentle hairbrush. and because i knew my family would respectfully decline coming over for judes birthday dinner. my whole day of planning out the window! i needed to focus on poor zoe with the lice- who kept alternating between, "this is the worst day of my life!" and "i'm so sorry that this happened" as if it's her fault. i became a screaming grump and others came to the rescue. my mom dropped off judes present and a lice kit (just meet me out in the driveway- she said). my friend with the most recent lice experience dropped off her extra lice kit- so we'd be covered. i made dinner, stripped all the beds, bagged the stuffed animals, started the laundry and , yuck, boiled the brushes. mike dealt with the hair-washing, and the nit picking (luckily, no nits!).
what's so funny about this evening is how typical it is - the foiling of the plans- i had specifically wanted this day to be all about jude- because so much of life is all about zoe. it was the first day in a long while, where i had been able to arrange a day with no zoe therapies to drive to or wait for, no rushing out of the house to get her somewhere. i wanted him, at least on his birthday, to have it be about him. so he had a play date, he got to choose the meals and the music in the car (yes dolly parton), and he didn't have to always come second- and then of course, - zoe comes home with lice- once again, not that she would have ever asked for it, she accidentally steals the spot light! he had to wait to open his gifts, wait to eat his dinner and then get his hair deloused too, just in case. jude- happy birthday- you'll be a better man for it.
Monday, March 8, 2010
happy birthday jude
i should be folding clothes. i should be wrapping gifts. but i have to pause for a moment of reflection and thanksgiving- because tomorrow, Jude turns 5! this miracle boy- given to me three times over- has reached five. it's such a long story- a story that needs to be told- - a story of the layers of God's grace- a story of olde-timey miracle- a story of prayer -a story of me finding God- a story of a life begun- and an old soul born.
samuel jude came to us after four years of infertility and struggle, and there could be volumes written on this chapter of sadness and growth. he came to us after years of needles and hormones and hopes and disappointments. after doctors and ultrasounds and discussions of risks and benefits, and a miscarriage and one last cycle before IVF. then, there it was -2 pink lines- in the magnolia room of an atlanta hotel. oh the JOY! the first time i was given him.
and then at the 20 week ultrasound- i sat on the other side of giving bad news- and in that quiet dark room, time froze and the air was felt and his tommy bahama tie will be forever in my memory as he told us with his head down that the brain of our boy was no good. there was hydrocephalus- too much water on the brain- his head was big, his brain was thin and some of it missing. this was bad, he said, very bad. we needed to make decisions- he would be handicapped- we should abort.
heaviness set in deeply- like wearing lead. i don't remember getting home that day- or breathing much- just feeling his legs kick and his body moving- and feeling alone. mike couldn't touch my stomach for several days. he couldn't go there. the next morning i woke up, a bit confused, and then i remembered what was happening, i reached for mike and started to cry- again.
"dare you to move, dare you to move, dare you to lift yourself up off the floor- "
i had a dream the next night. there was a young doctor talking to me - he had kind eyes- he was Jesus.
i said to him, i can't handle this-
he said, you have no idea what you can handle
i said, i don't want this-
and he just said- i know.
and put his arms around me and we cried.
i woke up and was at peace
i cried everywhere i went- how could this seriously be happening?- are you kidding me? we've been waiting four years for this child- you want me to abort him? he's been moving for 4 weeks? for me there was no decision. he was mine - i loved him, no matter what. then some good news came- i had an MRI- his brain was whole and looked good- now it was just too much water- they couldn't be sure he'd be normal- they couldn't guarantee. i didn't want a guarantee or a warranty, i just wanted to be left alone to have my baby. i didn't want the long faces of every OB i saw- i didn't want their pity or their concern or their sorrow- or their confusion over our decision to keep our son- i wanted them to share the joy of my pregnancy- i wanted to be treated with the same enthusiasm that i had about our son. thank God for judith bishop our midwife. she made me feel normal. she put it back in perspective. the choice had been make- and she was OK with hoping for the best. after convincing the perinatalogist that we could try labor instead of a c-section- i was induced at 38.5 weeks and on March 9, 2005- samuel jude reid entered the world with his eyes wide open, ready to eat. he was beautiful. he was perfect. he was stable. i had been ready for anything, emergency surgery, a horrific - distorted child- but there he was- wide eyed and hungry- an old soul. that was the second time he was given to me.
a few weeks later he went for his first MRI outside the womb. he was put to sleep and swallowed by that giant magnet. the purpose was to see his brain, and to try to understand why he had so much fluid. i broke up this experience which we had about 10 times in the first 2 years of life, in to 7 bite sized pieces. first getting him to stop nursing 6 hours before the scan- trying to comfort a child who knows you're there with your milk leaking everywhere and denying him food. then the anesthesia- watching your tiny baby go limp and be taken away with needles and oxygen. then the hour away from him, knowing he's deep inside a magnet- and feeling like your own heart has been removed and is being examined, only perhaps worse than that. then the recovery phase after anesthesia- that awful, unbaby smell of OR gases and tape, and the unnaturally cold feeling of a baby who's been lying limp on a hard table with nothing but a sheet for an hour. the next piece is the waiting. waiting for the results of this test- which was always for us on a friday, waiting until monday- like easter weekend- Jesus in the tomb. and finally the last bit, getting the news.
Samuel means "because i asked the Lord for him". Jude means "praise God". for the first three months of his life, we called him sam.
when he was 6 weeks old, after his third MRI, we got some really bad news- over the phone. we knew after the first scan, that there was some "mass" in his brain that looked like it had caused the build up of fluid. i was in nursing la-la land with a thriving, smiling little boy, and basically felt like mass, shmass, if it's not bad, i don't need to worry about it. but the doctors were not so at ease. on the third MRI, the mass began to look concerning, it was also bigger. they wanted blood work to look for tumor markers. the blood came back- the tumor markers were high- really high. this was bad- really bad. it looked like a malignant teratoma- it would take over his brain- it would kill him- there was nothing they could do- surgery wouldn't help- chemo wouldn't help- it would be about 6 months.
the world stopped. i was home alone with zoe and sam- i called my sister to come get zoe. i called mike to come home- and i fell to bits. i cried like i'd never cried before, i cried out all the salt in my body until my eyes stung so badly i couldn't see. i forgot to breath- i was just milk and tears. and there was sam- grinning at me.
good friends and family came and called and cried and helped. they brought chicken with olives and dessert. they cried too. mostly they just were there, on the phone or at our side. and the prayer chain went out- like the dogs calling to each other in 101 dalmatians, it was barked all over the internet and on the phone and in writing. pray for samuel jude- he has a brain tumor- pray for healing- pray for strength- pray for his parents who are crumbling to bits.
i got emails from people who'd been praying- people i'd known when i was a really little girl- people i'd never met. i can't explain it, but the peace that i felt was like nothing i've ever known before.
then God showed up again. we were in the MRI suite, waiting for him to finish the test- part three of the bite sized pieces. i was so worried, so afraid- what were they going to find- how much had this tumor grown- as we paced and waited-i felt the presence of God, by my side- again, in a way i can't explain- except to say that i know He was there- we were not alone. for all the years since- i cry in church when i hear, "blessed be your name on the road marked with suffering, tho' there's pain in the offering blessed be your name"- because i'm transported back to that basement MRI suite of moffit long hospital in san francisco when i could say "blessed be your name"- even in that darkness- because we were not abandoned there.
and i was given him a third time. the tumor had shrunk, the markers went down. they didn't really understand, but now this wasn't behaving like a malignant teratoma. we'd have to wait and see. praise God.
when he turned 12 weeks we started calling him jude.
by the time jude was a year and a half, we had learned to live in the gray zone - we had learned that being unsure, was much better than being sure about something awful. jude was now getting scanned every 3-6 months, and on the day to day he was doing great. that fall, mike traveled with his dad to a remote village outside of mbale, uganda. they went to a little church there for the afternoon- it was the home church of one of the drivers that mikes dad had used on a previous trip to the capital of uganda- several hours away. mike and his dad were the first americans to visit this village church. when they arrived, the people gathered around mike and said through a translator, " how is your son? we've been praying for him." this floored him. this little ugandan village church, a community devastated by AIDS and poverty, was praying for our little son, on the other side of the world. they had prayed for his healing, they had prayed for our peace. they had cared and loved and had faith- for someone they'd never met- someone they probably would never would meet. and this for us was life changing.
the story of jude deserves so much more than one entry on a blog- it has so many layers and there was so much gained and found in those dark and stormy months. his life is such a gift- given over and over- and i wonder what else is left to unfold.
Saturday, March 6, 2010
the grinch
one of the things that's hardest about having a kid with nvld is that it's kind of the opposite of "Groundhog Day" (the movie). everyday when i wake up- i have no idea how zoe will be. there are days when the planets have aligned and life is as sunny as can be and i wonder if maybe she doesn't have a learning disorder at all, maybe i've been all wrong. but then the next day even, all that goes out the window and she'll be completely off. like someone smeared peanut butter all over her brain, and it's just not working and she's ultimately frustrated, and honestly, who can blame her?
last week was a perfect example- monday, was a pretty good day, especially because mondays are classically our hardest. tuesday was rainy and kind of awful- math wasn't coming, she couldn't remember the names of the state capitals, she melted down over not being able to spell "piece" (i can barely spell it- the i-e thing!) and reading was a challenge. wednesday was a dream! her handwriting was excellent, she was focused and determined- she did piano and typing independently- she thought it was funny when she forgot how to spell a word- and she shone at math! and thursday was kind of like monday. if we could figure out what it is that makes a wednesday, we'd be set. we'd both be set. because try as i may to reign it in, i'm like an amusement park mirror- i take where ever she is and massively distort it. i over react. i get frustrated with her frustration. i even get frustrated at her inability. "what do you mean you can't can tie that? you did it yesterday?"
oh- right, that is the problem.
oh right and it's not your fault.
oh yeah- and you feel really bad about it too.
oh right, this is actually, YOUR LIFE.
people have said that having nvld is like trying to write backwards with your non-dominant hand while on muscle relaxants and living in a foreign country. imaging your sensory system is off, so you receive signals of pain when you're having your hair brushed, the vacuum sounds like being on the runway of an airport with out headphones, and when you close your eyes you feel off balance. now imaging that you can't block out the ticking of the clock while someone is talking to you. so now you don't really know what the person is saying, because not just is there a clock, but also a dog barking outside, and three other people taking at the table next to you. now its you're "turn" in the conversation, but you've missed part of what they said because of the distractions, and the persons tone of voice is confusing to you, you aren't sure if they're joking or mad at you, and their facial expression is also unclear. so you do what's easiest- when it's your "turn", you just talk. you talk about what you know- american girl dolls or harry potter or whatever comes to mind even if you just said it. this of course confuses the other person, so their tone and expression are even more difficult to read. you're not sure what to do, but you have a good intuition that this isn't going so well, so you internalize that and it begins to chip away at your self esteem. and then after years of this, you become really stressed out and anxious when you're in social situations- or places where you know you'll be overwhelmed. and it's hard to forgive yourself and accept that this is just who you are. it's hard to understand why God make you this way. it's hard to love yourself. and it's unfair, really unfair.
sometimes in these moments when i think I can't take it any more- i see how absolutely unbelievable she is. and i'm so humbled. i think i know her so well, and i do. but i have no idea of what it's actually like to be her. she has to deal with the inconsistency of this every minute of everyday. she is the one who wakes up and doesn't know if today she'll remember the motor sequencing to tie her shoe. if words will come out easily or if she'll struggle with saying what she means. if math will make sense or not.
when i can get it though my thick head to remember this,
my small heart grows three sizes that day and i ride triumphantly on my sleigh, down to whoville where i myself, can carve the roastbeast.
last week was a perfect example- monday, was a pretty good day, especially because mondays are classically our hardest. tuesday was rainy and kind of awful- math wasn't coming, she couldn't remember the names of the state capitals, she melted down over not being able to spell "piece" (i can barely spell it- the i-e thing!) and reading was a challenge. wednesday was a dream! her handwriting was excellent, she was focused and determined- she did piano and typing independently- she thought it was funny when she forgot how to spell a word- and she shone at math! and thursday was kind of like monday. if we could figure out what it is that makes a wednesday, we'd be set. we'd both be set. because try as i may to reign it in, i'm like an amusement park mirror- i take where ever she is and massively distort it. i over react. i get frustrated with her frustration. i even get frustrated at her inability. "what do you mean you can't can tie that? you did it yesterday?"
oh- right, that is the problem.
oh right and it's not your fault.
oh yeah- and you feel really bad about it too.
oh right, this is actually, YOUR LIFE.
people have said that having nvld is like trying to write backwards with your non-dominant hand while on muscle relaxants and living in a foreign country. imaging your sensory system is off, so you receive signals of pain when you're having your hair brushed, the vacuum sounds like being on the runway of an airport with out headphones, and when you close your eyes you feel off balance. now imaging that you can't block out the ticking of the clock while someone is talking to you. so now you don't really know what the person is saying, because not just is there a clock, but also a dog barking outside, and three other people taking at the table next to you. now its you're "turn" in the conversation, but you've missed part of what they said because of the distractions, and the persons tone of voice is confusing to you, you aren't sure if they're joking or mad at you, and their facial expression is also unclear. so you do what's easiest- when it's your "turn", you just talk. you talk about what you know- american girl dolls or harry potter or whatever comes to mind even if you just said it. this of course confuses the other person, so their tone and expression are even more difficult to read. you're not sure what to do, but you have a good intuition that this isn't going so well, so you internalize that and it begins to chip away at your self esteem. and then after years of this, you become really stressed out and anxious when you're in social situations- or places where you know you'll be overwhelmed. and it's hard to forgive yourself and accept that this is just who you are. it's hard to understand why God make you this way. it's hard to love yourself. and it's unfair, really unfair.
sometimes in these moments when i think I can't take it any more- i see how absolutely unbelievable she is. and i'm so humbled. i think i know her so well, and i do. but i have no idea of what it's actually like to be her. she has to deal with the inconsistency of this every minute of everyday. she is the one who wakes up and doesn't know if today she'll remember the motor sequencing to tie her shoe. if words will come out easily or if she'll struggle with saying what she means. if math will make sense or not.
when i can get it though my thick head to remember this,
my small heart grows three sizes that day and i ride triumphantly on my sleigh, down to whoville where i myself, can carve the roastbeast.
Wednesday, March 3, 2010
m-i-s-s-i-s-s-i-p-p-i
my nana died last night. at age 99 and 1 month exactly. it's a good thing-really. she's been ready for a long time. in fact, i think she'd started to wonder if God had forgotten about her living in Tennessee down the street from Dollywood. She was a really special lady. my memories of her are mostly far off- from when i was little, the age of my kids.
she taught me how to spell Mississippi. she made jello with coolwhip on a leaf of iceberg lettuce. she had that 6 pack of general mills sugar cereal boxes for us to eat when we came to visit. she made a mean lemon cake. she dressed well, and smelled good and knew her manners. she knew her bible inside and out, mostly by memory. her faith was deep and unwavering and steadfast. there was no question of where she would stand on something. she'd made it through many hard times- leaning on her God. she loved her husband, and cared for him until he passed on. she'd learned to drive in her 60's, and had walked several miles, in her little heels, to deliver her youngest when she was 44-refusing to get in the car because her labor would stop. " Bill, i'm going to have this baby!". and she had a sense of humor. this little lady birthed 4 wonderful children, reared them well, and sent them out to change their worlds, which they've all done. and so her legacy continues.
the last time i saw her was about a year ago in her nursing home in Tennessee . she was scooting around in her wheelchair holding a stuffed bear.
"oh, thank Goodness you're here! i'm trying to buy this bear and i don't know where to go?" she knew that she knew me, but wasn't sure how. i spent a while going between explaining to her that she owned the bear already and trying to answer the myriad of questions coming from my 3 kids: why is nana in that wheelchair? why does she want to buy that bear? does she understand you? can i have the bear? why does it smell funny in here? can we have some pudding like that guy? we went into the family room and i asked nana if she could tell the kids a bible verse. and then like sometimes happens with people with dementia, when they dig back deep in their pasts, the old familiar circuits get dusted off- and she got that twinkle in her blue eyes and started to remember.
when we were getting ready to go zoe held her hand and said what everyone else was feeling, "oh great grandmother wood, do you feel so bad that you can't walk and that you live in this nursing home all alone and do you just miss your husband who died terribly?"
last night when we'd been told that she was on her way- we prayed for her- to be pain free, to have easy passage, to feel loved, to not feel alone. zoe asked that God would make her a special room with flowers and at least one dog, and that her husband would be waiting and that she'd be able to dance with the angels. and today, i felt her smile.
she taught me how to spell Mississippi. she made jello with coolwhip on a leaf of iceberg lettuce. she had that 6 pack of general mills sugar cereal boxes for us to eat when we came to visit. she made a mean lemon cake. she dressed well, and smelled good and knew her manners. she knew her bible inside and out, mostly by memory. her faith was deep and unwavering and steadfast. there was no question of where she would stand on something. she'd made it through many hard times- leaning on her God. she loved her husband, and cared for him until he passed on. she'd learned to drive in her 60's, and had walked several miles, in her little heels, to deliver her youngest when she was 44-refusing to get in the car because her labor would stop. " Bill, i'm going to have this baby!". and she had a sense of humor. this little lady birthed 4 wonderful children, reared them well, and sent them out to change their worlds, which they've all done. and so her legacy continues.
the last time i saw her was about a year ago in her nursing home in Tennessee . she was scooting around in her wheelchair holding a stuffed bear.
"oh, thank Goodness you're here! i'm trying to buy this bear and i don't know where to go?" she knew that she knew me, but wasn't sure how. i spent a while going between explaining to her that she owned the bear already and trying to answer the myriad of questions coming from my 3 kids: why is nana in that wheelchair? why does she want to buy that bear? does she understand you? can i have the bear? why does it smell funny in here? can we have some pudding like that guy? we went into the family room and i asked nana if she could tell the kids a bible verse. and then like sometimes happens with people with dementia, when they dig back deep in their pasts, the old familiar circuits get dusted off- and she got that twinkle in her blue eyes and started to remember.
when we were getting ready to go zoe held her hand and said what everyone else was feeling, "oh great grandmother wood, do you feel so bad that you can't walk and that you live in this nursing home all alone and do you just miss your husband who died terribly?"
last night when we'd been told that she was on her way- we prayed for her- to be pain free, to have easy passage, to feel loved, to not feel alone. zoe asked that God would make her a special room with flowers and at least one dog, and that her husband would be waiting and that she'd be able to dance with the angels. and today, i felt her smile.
Tuesday, March 2, 2010
breathe
it's rain-snowing and it's march and i'm done with it. which is great, since i have so much control over the weather.
i spoke with an old friend today, who is in a dark place. she called me crying from her closet. i've been there. she has a kid who's struggling. i get that. she doesn't know what to do- she feels the out-of-controlness of life- and it's a way bigger deal than the weather.
last year, when zoe was 9 life grew dark in our house. she'd always struggled with learning, and sensory issues and with reading social cues, but suddenly this little girl who'd been very happy, relatively flexible, and easy going, became rigid and fixed and incredibly anxious. she began to decompensate and regress over the littlest things.
and life became all about walking on eggshells, just waiting for something to set her off. we developed avoidant behaviors. NEVER vacuum if zoe is home. don't turn on the mixer or the coffee bean grinder. i remember at one point feeling the absurdity of it all- but would still live in fear of these things happening at random in public. because if there was a vacuum cleaner on at the movie theater- beware! she would cover her ears and panic. this isn't so bad when you have a 4 year old, or even if you have a 6 year old, who looks like a four year old, but when you have a nine year old, and now 2 other little kids- it's, embarrassing, stressful, humiliating and basically something to be avoided at all costs.
some of the things were hard in their unpredictability.
me: "honey, daddy and i are going out for dinner tonight."
z: "but why didn't you tell me you were going out?"
me: "i am telling you, right now"
z: " but why didn't you tell me before!"
me: what???
some of the things were hard because of their predictability.
this one was a regular around our house when our au pair would get ready to go out with her friends.
z: "why didn't i see her change her shirt?"
me: "you never see her change? why would you see her change?"
try to logic out of that one!
and this would spiral down and down with her sobbing and angry, and i'm guessing, almost as confused as i was. and i was confused, baffled actually. who ate my sweet kid? who took zoe and replaced her with crazy?
there can be an incredible degree of hopelessness, isolation, fear and guilt that come with having a child with special needs. there is also a lot of hope and joy and amazement and perspective. but in those dark days- the negatives won. we were both out of control. perhaps my worst moment was grabbing her by the arms and shouting, "why are you so crazy!!"
can you imagine what she must have been thinking? "woman lets talk about crazy- you're 38! i'm only 9! and i have an actual diagnosis!" can you imagine her sense of abandonment? what a lesson in how to say you're sorry to your kid. she forgave me, still trying to forgive myself.
for some reason, and from what i've read about kids with NVLD, this age, 9-10ish is kind of the perfect storm. almost all of the things that are hard for them increase in frequency or level. academics become tougher. peers less forgiving and peer relationships more complicated. physical issues or motor planning become expected or routine (in kindergarden not everyone can zip there coat, in 4th grade you stick out like a sore thumb). meanwhile, your kid's becoming self aware, and that is probably the hardest part. the velveteen rabbit moments. becoming real. it's one thing to worry about kids being mean to your kid, or to see kids teasing when your kid doesn't get it. it's another thing to have your child cry in your lap about how they have no friends and why can't they just be normal. for us, for zoe, the storm came in third grade.
so about a year ago, one month after i'd started a new job (excellent timing) i began to get called from her school everyday.
"zoe's having a really hard time, can you come get her?"
me: "well, i'm kind of seeing patients now. what's going on?"
"well your daughter is so overwhelmed that she's hiding under her desk."
me: "ok, i get it. i'll be right there."
after one week of this, mike and i realized that life right now needed to change for us and for our kids. zoe was suffering. how could i spend all day with other peoples suffering, and not with my sweet child? so after 26 year of education, three years of residency, two years of fellowship and three years as medical school faculty, I jumped off the merry-go-round. i'm not saying that this choice was the only one, or that this choice is for everyone. simply that for me and for our family, this choice was essential. and in april 2009, i began to breathe.
i spoke with an old friend today, who is in a dark place. she called me crying from her closet. i've been there. she has a kid who's struggling. i get that. she doesn't know what to do- she feels the out-of-controlness of life- and it's a way bigger deal than the weather.
last year, when zoe was 9 life grew dark in our house. she'd always struggled with learning, and sensory issues and with reading social cues, but suddenly this little girl who'd been very happy, relatively flexible, and easy going, became rigid and fixed and incredibly anxious. she began to decompensate and regress over the littlest things.
and life became all about walking on eggshells, just waiting for something to set her off. we developed avoidant behaviors. NEVER vacuum if zoe is home. don't turn on the mixer or the coffee bean grinder. i remember at one point feeling the absurdity of it all- but would still live in fear of these things happening at random in public. because if there was a vacuum cleaner on at the movie theater- beware! she would cover her ears and panic. this isn't so bad when you have a 4 year old, or even if you have a 6 year old, who looks like a four year old, but when you have a nine year old, and now 2 other little kids- it's, embarrassing, stressful, humiliating and basically something to be avoided at all costs.
some of the things were hard in their unpredictability.
me: "honey, daddy and i are going out for dinner tonight."
z: "but why didn't you tell me you were going out?"
me: "i am telling you, right now"
z: " but why didn't you tell me before!"
me: what???
some of the things were hard because of their predictability.
this one was a regular around our house when our au pair would get ready to go out with her friends.
z: "why didn't i see her change her shirt?"
me: "you never see her change? why would you see her change?"
try to logic out of that one!
and this would spiral down and down with her sobbing and angry, and i'm guessing, almost as confused as i was. and i was confused, baffled actually. who ate my sweet kid? who took zoe and replaced her with crazy?
there can be an incredible degree of hopelessness, isolation, fear and guilt that come with having a child with special needs. there is also a lot of hope and joy and amazement and perspective. but in those dark days- the negatives won. we were both out of control. perhaps my worst moment was grabbing her by the arms and shouting, "why are you so crazy!!"
can you imagine what she must have been thinking? "woman lets talk about crazy- you're 38! i'm only 9! and i have an actual diagnosis!" can you imagine her sense of abandonment? what a lesson in how to say you're sorry to your kid. she forgave me, still trying to forgive myself.
for some reason, and from what i've read about kids with NVLD, this age, 9-10ish is kind of the perfect storm. almost all of the things that are hard for them increase in frequency or level. academics become tougher. peers less forgiving and peer relationships more complicated. physical issues or motor planning become expected or routine (in kindergarden not everyone can zip there coat, in 4th grade you stick out like a sore thumb). meanwhile, your kid's becoming self aware, and that is probably the hardest part. the velveteen rabbit moments. becoming real. it's one thing to worry about kids being mean to your kid, or to see kids teasing when your kid doesn't get it. it's another thing to have your child cry in your lap about how they have no friends and why can't they just be normal. for us, for zoe, the storm came in third grade.
so about a year ago, one month after i'd started a new job (excellent timing) i began to get called from her school everyday.
"zoe's having a really hard time, can you come get her?"
me: "well, i'm kind of seeing patients now. what's going on?"
"well your daughter is so overwhelmed that she's hiding under her desk."
me: "ok, i get it. i'll be right there."
after one week of this, mike and i realized that life right now needed to change for us and for our kids. zoe was suffering. how could i spend all day with other peoples suffering, and not with my sweet child? so after 26 year of education, three years of residency, two years of fellowship and three years as medical school faculty, I jumped off the merry-go-round. i'm not saying that this choice was the only one, or that this choice is for everyone. simply that for me and for our family, this choice was essential. and in april 2009, i began to breathe.
Monday, March 1, 2010
labyrinth
today is a day of blessing.
i couldn't sleep last night. bryn woke up at 1am with growing pains and that was it- i basically tossed and turned the night away with various strange dream segments based on half realities. i worried and then prayed and then fell back to sleep on and on.
i have this problem sometimes. the- 2am everything in the world is horrible and stressful problem- so if i happen to be awakened anytime near 2am, i'm pretty much doomed. last night the flavor of stress was zoe going to visit her old school today. so the middle of the night the "what if's" started. what if she is totally overwhelmed? what if she freaks out? what if she says totally inappropriate things? what if either she's miserable or they're miserable and they decide they never want her to come back? what if i'm homeschooling her for the rest of my life? what if she loves it and wants to go back and i'm not ready for her to go back? and then i remembered: Come and i will give you rest.
i went on a womens retreat last summer. it was at Serenbe. beautiful, quiet, peaceful, farm-to-table dinning, saltwater swimming pool, down-comforters on the beds. there was a lot of time to just be, and hang out with other women. but i was in a really bad place. things with zoe were at there worst. she was struggling almost every minute to keep herself from falling apart, and pretty much, so was i. one morning with the steam rising over the fields we went out to do the labyrinth walk. i remember feeling very empty and needy. i remember feeling afraid to walk quietly for 30 minutes with myself- because my head felt so full and heavy. heavy emptiness is a bad feeling. when it was my turn to enter the labyrinth, i hesitated and wanted to leap over the little stones and run off into the woods. i didn't want to walk the path, i didn't feel still and reflective, i felt antsy and afraid. but like so many times in life - you just have to put one foot in front of the other and start- and so i did. for the first quarter it was just quieting- which was actually good. then it came to me- like the ancient truths of this ancient practice were speaking through this path. "come to me, you who are weary and i will give you rest." i'd heard this so many times before. but this time i heard it differently. this time i heard an invitation. Come. this time, i was really weary. this time i heard, i will give you rest, this time, i heard a promise. and like a mantra, the rest of my walk as i wove in and out toward and away from the center- the spot where we find God- i heard this over and over. come to me, you who are weary and i will give you rest. i wasn't alone. i wasn't afraid. the stillness was good. there was a promise. there was hope. and i wasn't quite so empty.
the labyrinth is so much like life- we have our moments, our epiphanies when we are at peace, when we are close to the heart of God, when we are connected with others- toward the center. and then we have our moments on the edge- far away-forgetting there is a peace- and most of the time we're out there or somewhere in the middle. but we're still on the path. we're still moving. and the path always brings us closer to the center.
i couldn't sleep last night. bryn woke up at 1am with growing pains and that was it- i basically tossed and turned the night away with various strange dream segments based on half realities. i worried and then prayed and then fell back to sleep on and on.
i have this problem sometimes. the- 2am everything in the world is horrible and stressful problem- so if i happen to be awakened anytime near 2am, i'm pretty much doomed. last night the flavor of stress was zoe going to visit her old school today. so the middle of the night the "what if's" started. what if she is totally overwhelmed? what if she freaks out? what if she says totally inappropriate things? what if either she's miserable or they're miserable and they decide they never want her to come back? what if i'm homeschooling her for the rest of my life? what if she loves it and wants to go back and i'm not ready for her to go back? and then i remembered: Come and i will give you rest.
i went on a womens retreat last summer. it was at Serenbe. beautiful, quiet, peaceful, farm-to-table dinning, saltwater swimming pool, down-comforters on the beds. there was a lot of time to just be, and hang out with other women. but i was in a really bad place. things with zoe were at there worst. she was struggling almost every minute to keep herself from falling apart, and pretty much, so was i. one morning with the steam rising over the fields we went out to do the labyrinth walk. i remember feeling very empty and needy. i remember feeling afraid to walk quietly for 30 minutes with myself- because my head felt so full and heavy. heavy emptiness is a bad feeling. when it was my turn to enter the labyrinth, i hesitated and wanted to leap over the little stones and run off into the woods. i didn't want to walk the path, i didn't feel still and reflective, i felt antsy and afraid. but like so many times in life - you just have to put one foot in front of the other and start- and so i did. for the first quarter it was just quieting- which was actually good. then it came to me- like the ancient truths of this ancient practice were speaking through this path. "come to me, you who are weary and i will give you rest." i'd heard this so many times before. but this time i heard it differently. this time i heard an invitation. Come. this time, i was really weary. this time i heard, i will give you rest, this time, i heard a promise. and like a mantra, the rest of my walk as i wove in and out toward and away from the center- the spot where we find God- i heard this over and over. come to me, you who are weary and i will give you rest. i wasn't alone. i wasn't afraid. the stillness was good. there was a promise. there was hope. and i wasn't quite so empty.
the labyrinth is so much like life- we have our moments, our epiphanies when we are at peace, when we are close to the heart of God, when we are connected with others- toward the center. and then we have our moments on the edge- far away-forgetting there is a peace- and most of the time we're out there or somewhere in the middle. but we're still on the path. we're still moving. and the path always brings us closer to the center.
